Should CMV screening for babies be an option or mandate?
Congenital Cytomegalovirus or CMV is sometimes called America’s ‘Zika’. Babies contract the virus in the womb, and the symptoms are similar, but CMV is much more common. Forty thousand babies are born with CMV in the U.S. About one in five of those will develop long term health problems. A mom who passed the virus to her daughter has made it her mission to raise awareness, increase screening, and push for treatment. And, she’s already made huge progress.
Sara Doutre took many precautions when she was pregnant with Daisy six years ago. Still, she passed on CMV, a virus she’d never even heard of.
Sara said, “We found that CMV could cause a progressive hearing loss and while Daisy only had a mild loss in her right ear at that time, we knew it would progress quickly.”
Ten years ago, Albert H. Park, MD, Chief Pediatric Otolaryngology at the University of Utah Health and Primary Children’s Hospital, started studying CMV and helped develop a diagnostic test.
Dr. Park explained, “We saw that quite a few of these children who previously had no diagnosis, no one knew what the cause of their hearing loss was, we found out that it actually could be attributed to this virus.”
Dr. Park has become a passionate advocate for CMV screening, which has to be done within two to three weeks of birth. He teamed up with Sara and her mom, former state representative Ronda Menlove, to pass a bill mandating CMV screening for babies who fail the newborn hearing test. With that screening, Daisy could have started therapy and an antiviral drug sooner.
“Had we been given that option when she was an infant, we would have taken that option. We would have used the antivirals to help prevent that progression of her hearing loss or prevent hearing loss,” said Sara.
Dr. Park continued, “I’d love to be at a stage where I don’t see kids when they’re four or five with progressively worsening hearing loss from congenital CMV because we have interventions or ways to prevent that from happening.”
Dr. Park has FDA approval to start a clinical trial of a CMVhealth antiviral to stop hearing loss. He hopes to start enrollment this winter.
The trial will run in Utah and twenty nine other sites. Iowa and Connecticut followed Utah’s lead with legislation mandating CMV screening for infants who fail the newborn hearing test. Illinois and Oregon also require education. For now, pregnant moms can lower their risk for CMV infection by hand washing frequently and not sharing straws, utensils, food or drink, since CMV is transmitted through bodily fluids.
WHAT IS CMV?
Cytomegalovirus (CMV) is one of the most common viruses in the United States, but yet it goes undetected in many healthy people. It is related to the viruses that cause chickenpox, herpes simplex, and mononucleosis. The danger of this virus is that once infected, it stays in the body for life and there is no cure. The virus becomes apparent and can cause concern when an individual is pregnant or has a weakened immune system. A woman who obtains an active CMV infection while pregnant can pass down the virus to the baby. Some of the symptoms experienced by babies are premature birth, low birth weight, yellow skin and eyes … also known as Jaundice, enlarged and poorly functioning liver, purple skin splotches or a rash or both, abnormally small head … a condition called microencephaly, enlarged spleen, pneumonia, and seizures. In individuals with weak immune systems, some of the symptoms might affect the eyes, lungs, liver, stomach, brain, intestines, and esophagus. Healthy people may not experience any symptom or experience few symptoms. But when they first get infected they may experience symptoms such as fatigue, sore throat, fever, and muscle aches.
CMV SCREENING: There are many different methods to determine whether an individual has an active CMV infection. The type of test given and samples collected is based on the preferences of the individual, the age of the person, overall health status and symptoms, and the health practitioner’s findings and belief of organ involvement. One test that is done is called an Antibody testing which is done on blood samples and can help diagnose CMV infection in young adults, pregnant women, and some people with a compromised immune system. As a result of a CMV infection, there are two types of CMV antibodies that are produced: IgM and IgG, and one or both may be detected in the blood. IgM and IgG are present in most individuals within a week or two after the initial exposure. Furthermore, the presence of CMV IgM antibody will present in an individual’s bloodstream for the rest of their lives. Lastly, CMV antibody can also be used to determine immunity to primary CMV infections for people before organ or bone marrow transplantation and for someone diagnosed with HIV/AIDS. The other type of test is direct detection of CMV in blood, fluid, or tissue sample by culturing the virus or by detecting the virus’s genetic material (CMV DNA). Viral detection is used to diagnose infections in newborns and may be used to detect or confirm active infections in others.
CMV IN NEWBORNS: CMV is more common than Down syndrome, Zika, and Spina Bifida, but many people are unaware of this condition. In underserved areas, the prevalence of the virus can be as high as 80% or 90%. When a mother contracts the CMV infection while pregnant, there is a chance that she might pass the infection to the unborn child and that the child may develop problems with the infection. The consequence of obtaining the disease can cause brain defects, hearing loss, developmental delay, and worse, fetal demise. CMV can affect 0.5% to 1% of all live births; however, the majority of these children will have the infection but not develop the disease. For instance, a mother could have an older child who gets the infection but does not show the symptom of the disease, but then that child accidentally passed down the condition to their pregnant mother.